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Archives for: July 11th, 2018

NORD 35th Anniversary Blog Series: 1990s-2000s

Written by Jennifer Huron on June 25, 2018

2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary.  For the past 35 years, NORD has taken pride in being the rare disease community’s biggest advocate.  Our policy, research and other efforts have played a significant… Read More

FDA Announces First Gene Therapy in U.S.

Written by Mary Dunkle on August 31, 2017

In an action the rare disease community has been eagerly awaiting, the Food and Drug Administration (FDA) has announced the first-ever approval of a gene therapy in the U.S. The product is Kymriah, and it is approved to treat certain children and young adults who have a cancer of blood… Read More

Rare Diseases & Orphan Products Breakthrough Summit Speakers

Written by Jennifer Huron on October 5, 2016

RareSummit_Logo_RGB_smallWashington, D.C., October 5, 2016 – NORD, the leading independent nonprofit organization representing the 30 million Americans with rare diseases, today announced the three keynote speakers for its 2016 Rare Diseases & Orphan Products Breakthrough Summit to be held Oct. 17-18… Read More

Guest Blog: Tour For A Cure

Written by Jennifer Huron on August 3, 2016
 By Alison Rockett Frase, Guest Blogger

In 1995 our son, Joshua, was born with a very rare muscle disorder called Myotubular Myopathy; an early death was imminent for our first-born. Through the despair and dismay, a vision of faith and hope was birthed through the Joshua Frase Foundation. Our vision seemed… Read More